[Dawn]

Hi,
Very sorry about your diagnosis. You have come to the right place for support.

I just read Michelle’s post and encourage you to talk with her. She was an incredible support to me when I was preparing for the removal of my bladder and I know she is there if I need her.

I was 47 when diagnosed and had my bladder removed and now have an orthotopic neobladder. I am 1.5 years cancer free. Please do not hesitate to reach out to me if you have any questions.

Bladder Cancer Canada will align you with the right people to help.

Thinking of you!
Dawn

[Dawn]

This is a great initiative. Developing material to help patients would be so beneficial.

I have provided answers below.
My RC & neobladder urinary diversion was May 13, 2013 and confirmed cancer free May 28, 2013.

Here are my answers to the questions:
1. How long did you have a urethral Foley catheter inserted? 16 days
2. How long did you have a suprapubic (Malecot) catheter? I did not have a separate catheter. Dr. Shayegan had everything connected to the Foley catheter – it was quite the visual site when that was removed and no discomfort.
3. How often were you trained to irrigate the catheters? Every 6 hours
4. When was your first post-op appointment with your surgeon? 16 days
5. If you had chemo following surgery, how long between surgery and the start of chemo? No chemo
6. When was your first CT scan post op? 9 months
7. What post op instructions were you sent home with to help in your recovery? none, use Bladder Cancer Canada
8. What complications were you told to expect or at least be aware of? none
9. If you had complications, what were they? None. Once the catheter was out and I drank a good amount of water each day, passing urine was no problem. I had constipation as it was recommended to avoid fibre. However, I reintroduce fibre to my diet and never looked back.

Thanks for your ongoing excellent support of the bladder cancer community,
Dawn

[Dawn]

Hi Rick – sorry to hear the news of your diagnosis. I was diagnosed with CIS – high grade on 28 May 2012. What I found helpful when meeting with my urological oncologist in Hamilton was to better understand the statistical data behind the recurrence of CIS over time. This helped me decide the best course of action after finding out that the CIS was still present after 1 round of BGC. (I am 48 years old). You have come to the right place for information – the BCC Team is incredible! Keep asking your great questions! Dawn

[Dawn]

Hi, You are asking great questions! I will share my experience regarding muscle spasms. After my first TURBT with the associated treatment of mitomycin I did experience spasms at night. During the day I was uncomfortable, but ok. However, at night I would have spasms and pain that would get me out of bed – could not sleep. The occurrence of this was most severe 3 weeks after the treatment. It did settle down by week 5. Talk to your doctor about them – they can explain what is happening. My GP told me it was due to the nerves resting at night and being impacted by the mitomycin. Good luck with your BCG Treatments. As others have stated, you will experience discomfort and urgency to pee as the treatments progress. BCC is a great support! Dawn

[Dawn]

Hi Gord,

So great to read you are doing well. I am 8 weeks post RC with neobladder by Dr. Shayegan and things are going great for me. I just had a follow-up appointment with Dr. Shayegan and we discussed low residue diets.

I had read about metabolic changes due to removal of a portion of the ileum and found that I was not experiencing any of these issue. I also had a copy of Dr. Shayegan’s notes on my surgery and learned that he did not remove any portion of my terminal ileum. I believe this has helped me being able to eat the foods I like (fruit, vegies, fiber) and not worry about how it is digested. Dr. Shayegan agreed that eating a regular diet is fine. I agree that was good to be cautious with certain foods for the first few weeks to allow for healing of the ileum.

Each surgery may be different – when you visit Dr. Shayegan next, have him explain what portion of the ileum he took. I have a Studer Pouch – and for me, they went in 25cms from the termination of the ileum then removed 60cm to create the neobladder.

If you have any questions, please do not hesitate to contact me. nickerson.dw@gmail.com.

Dawn

[Dawn]

My RC – Neobladder is scheduled for May 13, 2013. After connecting with some of our members who have graciously shared their story and offer their ongoing support, I am ready for this next step. I have armed my home with many of the necessary items to be comfortable when I get home. The learning is good!

On a great recommendation, I had a very informative appointment at a Pelvic Health Clinic to assess my Pelvic Muscles and provide instruction for exercises. They also provided insight and materials to help managing post surgery pain – key ingredient – surround yourself with what makes you happy and lots of laughter.
This TED video on understanding pain made me laugh… http://m.youtube.com/watch?v=gwd-wLdIHjs

My toolbox of family, friends, BCC and BCC member support are the foundation for a successful recovery.

Thank you BCC – you have made this journey so much easier!
Dawn

[Dawn]

Thanks Leva!
Some questions:
> How much water is the right amount to drink per day to keep bladder healthy?
> What is the recommended diet when recovering from Radical Cystectomy?
> Do certain foods help reduce bladder infection and not cause bladder discomfort ?
> Are there certain foods to avoid during treatment – TURBT, BCG, Chemo? (red meat, milk, coffee, alcohol, some types of tea?
> Should suplements be considered even if on a healthy diet of fruits, vegetables, fish, turkey, whole grains?

[Dawn]

What an incredible milestone! Enjoy the many happy dances you will be doing into the future! Dawn

[Dawn]

Thank you all for sharing your story and best wishes.
It helps so much to get insights from others who have had RC. I look forward to communicating more next week – I find out what urinary diversion I will have on the 20th March.
The future is bright if I am able to sleep through the night again. The journey is still long, but knowing an RC is in the near future is very comforting.

Dawn

[Dawn]

I joined this website today and appreciate the insights of so many people. I am in my 40’s and grateful for the incredible love from my husband. The impact on him has been significant.

I wanted to reach out and provide you with some details we found on the St. Joseph’s Healthcare Hamilton web side.
Go to the section for Patient Information under Quick Links. We read the details they have under Neobladder and Catherization.
The YouTube video of Dr. Bobby Shayegan presenting at a Patient Meeting very helpful as well: http://www.youtube.com/watch?v=gJSOMv1eLO0
I will review my research and see if there are other details that may assist you.

Dawn

[Dawn]

I felt I needed to maintain a medical history once discovering that bladder cancer would most likely be a long journey. While pulling together my information, I stumbled across a medical journal on the side effects of cyclophosphamide – a drug I was prescribed when treated for Kidney disease (Membranous Glomerulonephritis) 15 years ago. The insight for me is to periodically research medications you have been prescribed in your past and see if there is new information. This would have signalled me to talk with my GP when my symptoms started and request an appointment with a Urologist or Nephrologist. Cyclophosphamide has several side effects, including bladder cancer that may not show itself for 15-17 years. Many of us have beeen treated with Mitomycin C after TURBT. I will be following the side effects into the future – “just in case”.

[Author]

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